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  1. COMMUNITY

    1. Announcements, meetings and other resources

      Including why this site is not for newly diagnosed low-risk men trying to select an initial treatment.

      797
      posts
  2. ADVANCED PROSTATE CANCER FORUMS

    1. Primary hormone therapy

      Early or late, long or short, intermittent or continuous, radiation or not, one or more agents (ADT1, ADT2, ADT3, ...)

      250
      posts
    2. Secondary hormone therapy

      When primary hormone therapy fails, this may be the next step.

      88
      posts
    3. Castrate Resistant Prostate Cancer

      CRPC - Testosterone is at castrate level, but the cancer is again advancing.

      154
      posts
    4. Metastatic

      Evidence is found in bones or soft tissue through imaging or pain.

      348
      posts
    5. Very high risk

      Men with very high risk may need more aggressive treatment than most. What indicates very high risk?

      55
      posts
    6. New agents

      Drugs and other treatments of the future - under trial or newly approved.

      246
      posts
    7. Every little bit helps

      Some drugs given for other conditions have anti-cancer effects.
      Some foods have anti-cancer effects.
      Exercise certainly helps
      An anti-prostate cancer cocktail may be in order.

      154
      posts
    8. Radiation, diagnostic imaging, bones and other prostate cancer topics

      All types of radiotherapy, diagnostic imaging, other diagnostics and anything else on prostate cancer not covered in other forums.
      (If it's not about prostate cancer it should be in The Lounge.)

      367
      posts
    9. Articles on other sites

      These articles are not on JimJimJimJim.com. Click on a link in one of these topics and you will be taken to another site where we have no control over what is posted.

      376
      posts
  3. MEMBER'S STORIES AND NEEDS

    1. My story

      Members tell of their own history.

      659
      posts
    2. Any suggestions?

      What should I ask my doctor about on the next visit?

      241
      posts
    3. The lounge

      Any topic you like goes in here.
      No defamation, please.
      Nothing offensive, please.

      467
      posts
  • Posts

    • Admin
      Agenda Friday 22 November 2019 One word of wisdom, possibly From our leader, Jim Roundtable Any member who wishes to tell their personal prostate cancer story, update a story we have heard, or ask a question is welcome.   Apology? Then, post a reply on the forum. Start with the Go to this Topic button (bottom of this email). You must dial in - we do NOT dial you. Landline - Anywhere in Australia - 25 cents 1300 289 804 (landline call from anywhere in Australia) (cost 25 cents)  When asked, enter the Access Code 44 48 67 38# (no spaces needed) You will be asked your name and business when entering the conference. Something like: 'Bill Smith from Perth' would work well. Mobile to that number - Anywhere - Your phone plan cost Some mobile plans may charge more for 1300 numbers. Best check your plan, or use one of the local numbers below. Mobile local - Anywhere  - Your phone plan cost City   Local Number Canberra   02 6210 0851 Sydney   02 9696 0774 Hobart   03 6218 0647 Melbourne   03 8687 0635 Brisbane   07 3811 0988 Gold Coast   07 5560 0956 Adelaide   08 8220 0836 Darwin   08 8989 0817 Perth   08 9460 0829  When asked, enter the Access Code 44 48 67 38# (no spaces needed) You will be asked your name when entering the conference. [At a meeting time, these numbers and codes will often be on each page of the website for members.] Phone numbers and code are only in emails. Problem? Contact Jim Time 9:30am - 11:00am Eastern Standard Time (Queensland) The formal phone-in meeting ends after 90 minutes. The lines are kept open for up to an hour after that for members to informally chat. Daylight savings times Brisbane 9:30am Sydney, Melbourne, Hobart: 10:30am Adelaide, 10:00am Perth 7:30am Winter times Brisbane 9:30am Sydney, Melbourne, Hobart 9:30am Adelaide 9:00am Perth 7:30am Daylight saving ends first Sunday in April Daylight saving starts first Sunday in October Apologies From. Late starters Maybe you haven't had access to the agenda or you have late breaking news you would like to share. Tell the chairman here at the beginning of the meeting that you would like to speak, and he will fit you in - probably later, perhaps right now if that suits. Special expert guest speakers ... Roundtable - new stories, updates, questions Any man who wishes is welcome to contribute here. Formal end The Chair will declare the formal part of the teleconference closed at his discretion, perhaps around 11am. The teleconference lines will be kept open until at least 11:30 for anyone who wishes to continue discussions, update his health, or just chat. Informal chat Any topic you like - topics we didn't reach, something discussed earlier you wish to comment on, an update on your health, how your new boat is going, moaning about the weather, anything that you wish to say. Disclaimer This Community does not give medical advice. No members are authorised to give medical advice. Ask your doctor if you hear anything here that you think may be related to your treatment. Mobile phone warning The costs of mobile calls are nothing to do with the Advanced Prostate Cancer Support Group or with PCFA. They are between you and your phone provider (Optus, Telstra, Virgin, Vodafone, etc). If you dial one of the capital city numbers given above from a mobile phone, the cost to you will be the cost on your mobile phone plan. If your plan gives you free, or low cost local calls, and you are in one of these cities, it should be free, or a local call. If your plan gives you free, or local cost national calls that should work too. Be sure - call your provider, give the number you might be calling, and check the cost for you to call that number. Speaking time We want many voices to be heard. If you are a member listed to speak below, the chair will probably expect you to take no more than about 5 minutes on presentation so there is plenty of time for others to respond. Special Guest Speakers are invited to speak for 10-15 minutes, then field questions. Guidelines No noise House - radio, TV, computer, pets, other phones, conversation Yourself - mute button, or mouthpiece away from mouth Phone - call waiting off (#43#), Mute button or hang up to leave the room. No mute button? ##4 to mute, ##5 to unmute. Cordless phone - don't carry, put on folded handkerchief to limit reverberation Other calls - Please do NOT use call waiting or another line on the same phone to take another call - members around Australia are left listening to your 'hold' music until you return. Speaker phone Please do NOT use a speaker phone, unless you are very good at keeping it Mute, and at lifting and using the hand piece when you wish to join in the conversation. Mobile phone You will need enough charge for the length of the call, or take the call with your charger plugged in. Speaking Speak clearly into mouthpiece in ordinary voice. Say who you are when signing in, and each time you speak. Listen for the gavel. The Chair may need to interrupt. It's a meeting of 20 people, not a simple phone conversation. If you are not one of the two people in the particular conversation at the time, keep your mute button down and let others contribute. Help the secretary by later emailing details for the minutes. Restarting You may hang up and sign in again as many times as necessary. Sometimes we may have to restart the meeting - dial in again. With everyone calling at once you may need to try more than once. Future phone-in support group meetings Fourth Friday of each month, except: January (One week late for Australia Day) and December (One week early for Christmas) Phone-in support group meeting dates 2019 22 November 20 December (one week early for Christmas) Phone-in support group meeting dates 2020 17 January (one week early for Australia Day) 28 February 27 March 24 April 22 May 26 June 24 July 28 August 25 September 23 October 27 November 18 December (one week early for Christmas) Changes or questions If you wish to update us about any changes in your health or treatment, or have a question you would like answered or discussed, or you would like to talk about joining a teleconference group, let us know. Then we can put it high on the agenda so it doesn't get lost - just reply to this email, or use Contact Jim on JimJimJimJim.com. Face-to-a-name meetings South East Queensland and Northern NSW Saturday 7 March (Greenbank) Saturday 6 June (Tweed) Saturday 7 September (Greenbank) 11:00am for lunch at noon Victoria Saturday: to be announced 11:00am for lunch at noon Sydney Need a volunteer to organise a central venue: Contact Jim or Nev 11:00am for lunch at noon This message has been sent to you because you are a member of the Australian Advanced Prostate Cancer Support Group. Visit JimJimJimJim.com and click on Contact Jim if this is a problem.
    • DarrylB
      Hi Greg My picture is the same as yours, I am 63yrs old and had a disastrous robotic prostatectomy in 2010 by a person I would call incompetent. My gleason 6 cancer must have been spread by the biopsy or mechanical means with the robotic surgery. None the less my PSA began to rise about 11 months post surgery and has continually since with a few tests showing pause and in some cases temporary reduction.  My results at the moment is my PSA is .18 and last test in May 19 was .24. It seems Australia is the only country where .1 means biochemical recurrence and the rest of the world is .2. I am faced with the same decision making issues you have and I have decided to hang in there and watch and wait. I am waiting for immunotherapy to come of age and at the moment it is probably 3 yrs or so away. There is trials being performed now.  I intend to wait till they have killed a few hundred or so before I roll up, that will give the specialist time to perfect the cure. I am serious about my path for cure as NONE of the treatments currently available offer a cure. Another man local to me has had radiation to the pelvis with exactly the same story, that is the cancer might be local in the pelvis so "let's just blast it anyway"... No evidence and No guarantee it will do anything but fill the radiologists pocket with money!  It's a worry! He is just about finished his radiation course so I will catch up and see how he went. Dr Bert Vorstman (USA) suggests a negative full body scan may mean the microscopic cells might already be in the bone marrow... if so radiation to the pelvis will not only cause serous damage to the local organs and blood vessels but subject you to cancer in the future. I am glad you are cautious because every step from here is downhill with any of the treatment options offered. You'll notice I said treatment not CURE. Oh, I forgot to mention Australia seems to be so backwards in PCa treatments, you'll notice when you research enough that this is so. This website publishes many interesting article about trials and outcomes.... https://prostatecancernewstoday.com/2019/10/16/long-term-hormone-therapy-does-more-harm-than-good-in-prostate-cancer-patients-with-low-psa-levels-after-surgery-analysis-shows/?utm_source=Prostate+Cancer&utm_campaign=550e1b01e2-RSS_MONDAY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_a6d9c27ca8-550e1b01e2-71328057 all the best and don't panic, take your time and research every angle of any options offered.   Darryl
    • Patrick Turner
      Hi gregmac, If your Psa is only 0.19, then why be so worried? At age 62, my Psa went to 5 in 2009, I got biopsy at Psa 6, Gleason 9 was found, and open RP attempted in 2010, and PG was inoperable with Psa at 8. No mets were found, but there was no PsMa scan at that time. So I was assigned to begin begin ADT for 2 years and got 70Grey EBRT after first 6mths ADT. This didn't work because once I paused ADT after 2 years to see if it had worked Psa whooshed up from 0.08 to 8 in 6 months as T came back to a normal level. I recommenced ADT and am still on it, and it lasted to 2016 with help from Cosadex then Zytiga added.   By them all my sexuality was exterminated but didn't matter at all because I was alive not dead, and I didn't have a wife to please. I kept both body and mind fit by cycling 220km a week. Psa has been up and down like a yo-yo and highest its been was after 5 chemo shots in October 2018 when it went to 50, after beginning chemo at 12. Chemo failed, I knew it would, my oncologist said it would, and it did, so he referred me for Lu177.   I got a few PsMa scans after 2016 when Psa was about 5, and saw the growth of many lymph node mets and bone mets and there wasn't anything I could have done to avoid that before 2016 when getting Lu177 wasn't a choice I could make easily. But in November 2018 I began Lu177 given at Theranostics Australia clinic in Sydney, and Psa was 25. I began Xtandi after 3rd Lu177 shot, and now, after 4 shots of Lu177 and 5 months after last PsMa scan that told me I had nothing more to worry about, Psa has gone down more and was 0.32 a week ago, and so things look good for me, I might get repeats of Lu177 if it comes back, but seems like I should live another 4 years to 76. I had a pause off the bike for 3 months last winter but am back to 220km a week at 72yo. I've just survived 10 years since diagnosis. But Pca would have started in 2004, but nothing was done until Psa went to 5, so I had low Psa for larger amount of Pca. Not a good start for treatment to begin. But a friend of mine died within 3 years of diagnosis that seemed so treatable at first, but his Pca mutated so fast it overwhelmed whatever his best doctors in Oz could do for him. I have another friend who had unknown cancer in his neck about 12 years ago, at about 65, and then minor op, RT, chemo, and after surviving that he gets Pca, has RP, undetectable Psa for 3 years, but it slowly rises, so he had same70Grey EBRT that I had, Psa went undetectable but at 79 its on the rise again, and he's scared. He's never had ADT. But his sexuality was also exterminated too early, when he had a lady pal still able to do it. ADT side effects may not affect him much but might hold down Pca for years.  But his Pca is nowhere near being able to kill him soon, so worrying a lot about it is pointless. I have had to learn to live with Pca as a chronic condition, and despite me feeling Pca could have me in palliative care within a year at any time over last 9 years after 2009, I really didn't worry too much about how long I had left because I kept asking doctors what could they do, where could I get some good treatment and I read all I could about Pca online, and talked to many about latest treatments such as Lu177. Luckily, doctors like seeing me turn up for a talk dressed in lycra, and doing all I could myself to stay healthy, and found solutions that were available outside the public hospital system. Lu177 has turned out to be the best treatment so far, and had it been available in 2009, I may have done well, but then it could have come back, and there's only so many repeats of Lu177 that a man can have. The trouble with Pca is that you can have a pile of treatments when Psa is low, and the darn thing still grows back like an unwanted weed that you can't get rid of in your garden of life.  IMHO, you must keep fighting, but there's a point where whatever treatment you might like or have faith in may give you a pile of side effects that you have to suffer sooner rather than later, and still not get a cure. Not many men get into remission with Pca. We would like it to happen, but it just does not happen and best we might hope for is that we have it under control when something else takes us out.  Patrick Turner.
    • GregMac
      Thanks for all the feedback so far it's much appreciated.    
    • Admin
      PSMA detection is better at higher PSA. Detection rates of [68Ga]THP-PSMA PET/CT increased with increasing PSA level in this particular PSMA scan: 94.1% for a PSA value of ≥10 ng/mL, 77.3% for a PSA value of 2 to <10 ng/mL, 54.5% for a PSA value of 1 to <2 ng/mL, 14.3% for a PSA value of 0.5 to <1 ng/mL, 20.0% for a PSA value of >0.2 to <0.5, and 22.2% for a PSA value of 0.01 to 0.2 ng/mL.  (https://www.ncbi.nlm.nih.gov/pubmed/29308527) I had recurrence detected in my prostate when my PSA was 0.029
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